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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Thu Nov 30th, 2006 01:49 |
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Mark
Please consult with your Dr about starting on Benicar.. Has Hope started her antidepressant? do you want to wait to be settled on that med first? We recommend to please discuss this with your Dr. thank you.
If Dr agrees: To Resume MP: We recommend: Take the Benicar 40mg Q6H or the equal dosing of 20 mh Q3H alone for a day or two to see if you have any intolerable adjustment symptoms and then can resume minocycline as per below.
If you have the support of your Dr re doing MP: after taking Benicar for a day or two it is fine to take mino 25mg x 1 dose - wait - and let us know the response.
We need to know
1. what the response is and
2. when in number of hours the response occurred after the dose was taken.
First step to minimise symptoms: The Benicar dosage 20mg Q3H : If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during the cycle, or adjust dosage to 20mg Q2H.... see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
Use Dr Rx Valium or anxiety meds..
Frequent mino dosing isnt suitable for everyone. for some, it can increase the symptoms.
The aim is to be able to use the every other day mino schedule. The dose can be taken more or less frequently than that ONLY if it is assessed as being necessary and helpful to achieving tolerable symptoms..
It is important when symptomatic to be sure to avoid light and Vitamin D etc as per the guidelines.
please list all the meds/dose/schedule being taken every time you post thank you..
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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hellohope
inactive member
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Posted: Fri Dec 1st, 2006 09:39 |
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| Hi M.P.ERS Hellohope taking benicar Q6H . No mino yet. We have decided to try and get through without antideppressants and valium as they are really causing more problems with heart irregularities which we dont need more of, and they are not helping with sleep.Do you know if linseed is o.k. on the M.P. I couldnt see it in the foods to avoid as hellohope bread has got some in.Can a glass of wine of a shot of brandy help to relax or would it cause more problems.Thanks Mark....
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Posted: Fri Dec 1st, 2006 13:05 |
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Mark,
Can you tell us what antidepressant Hope was taking? Antidepressants don't usually cause arrhythmias. It's important for us to know these details in order to offer accurate suggestions.
We do not recommend the use of alcohol to relieve anxiety. It seems you do not realize that anxiety and arrhythmias are caused by Th1 inflammation. These symptoms will exacerbate with the expected immune system reactions and are a sign that the MP is working.
Linseed oil is derived from the flax plant which contains some Vitamin D.
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hellohope
inactive member
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Posted: Sun Dec 3rd, 2006 09:33 |
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| Hi Hellohope is taking benicar 20 mg Q3h. No mino at present. No other meds.She was taking 2mg of valium when needed but didnt put her to sleep and had increased palpitations which is listed in the possible side effect data sheet.Also she was taking Endep (amitriptyline hydrochloride) which also lists fast or irregular heartbeats as one of the more serious side effects on the consumer medicine information sheet.Also she hasnt taken mino for approx 2 weeks and she still gets arrythmias( atopic and PVCs ) with the benicar Q3H block, sometimes she doesnt get any for a couple of hours then she might suddenly get 6 in one hour.Last night she got 6 PVCs in 30 minutes so she crushed 20 mg of beniar and swallowed it and they stopped .She only had one in the next hour .Before hellohope went on to the M.P. she was taking a product called Transfer Factor Plus for 4years every day .Its made by 4 life research very expensive but the best immune booster on the market.I am just wondering if her strong immune system is killing off bacteria at a decent rate.She is a bit worried about introducing mino when she is already getting a immune response,and the mino causing an intollerable heart herx.On another subject does anybody in australia know of a safe bread for the M.P. Thanks Mark....
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Vicki SA
Member in Phase 3
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Posted: Mon Dec 4th, 2006 02:46 |
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Mark,
I use Helga's Bread and as far as I can tell it doesn't have any ingredients or supplementation that affect D. The one I have here today is the Traditional Wholemeal and it does have soya flour in it, so as always, read the label! 
Cheerio
VickiLast edited on Mon Dec 4th, 2006 02:47 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Posted: Mon Dec 4th, 2006 03:33 |
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Mark,
The side effects of medications often reflect their ability to uncover underlying clinical symptoms, like the heart's tendency to produce premature heart beats. This is all part of the disease process.
The heart is a muscle with nerve conduction fibers throughout it. Th1 inflammation can cause the conduction system to misfire. The number and type of premature beats that Hope is having is considered benign by her doctors.
It is unreasonable to expect that she will not have any premature beats while on the Marshall Protocol. The immnuopathology required to heal the heart tissue almost quarantees that the premature beats will increase before they decrease and then finally go away all together.
If taking anxiety medication makes Hope more anxious, then she should not take it. She can ask her doctor what other sleep aids might work for her if insomnia is an intolerable symptom.
Taking an extra Benicar when the premature beats upset her is the recommended action and it seems to be working. It's a good sign that she feels confident enough to take it.
I can't say what transfer factor did to her immune system but medications touted to "boost the immune system" are of little value. The immune system of sarcoidosis sufferers is overactive and this is the most aggressive Th1 disease. The immune system needs to be helped to function effectively and that is what Benicar does.
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Lottie
Board Staff
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Posted: Mon Dec 4th, 2006 07:21 |
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Mark and Hellohope,
I was diagnosed with Sarcoidosis in 1999, and echocardiograms have shown that I have cardiac involvement, by virtue of inflammation which has shown up on them. My cardiac symptoms started showing up when I was 19 (I’m 58) in the form of chest pain. I “progressed” to an occasional rapid heart rate of 120. That became more frequent and the doctors patted me on the head and said that something must have been bothering me whenever it would happen. On the day that it reached 160 beats per minute, I was referred to and seen by a cardiologist in the same day. Based on his exam, and an echocardiogram, I was diagnosed with Mitral Valve Prolapse (MVP). My EKG’s have always been “normal”.
When I was first diagnosed with Sarcoidosis, and went on Prednisone, my heart symptoms settled down considerably, I had rare PVC’s, and the rapid pulse rate didn’t occur as often.
In 2004, while I was still on Prednisone, my cardiac symptoms reappeared. Increased shortness of breath, frequent rapid pulse, and PVC’s occurring much more frequently. My Primary Care Physician didn’t hesitate to send me for an echocardiogram. It showed that the inflammation that had initially “disappeared” when I had been on Prednisone for about three years was back and it was worse than it had been in 1999 when I was first diagnosed.
The cardiologist wouldn’t return my PCP’s phone calls over a two week period, and so, my PCP requested that I start doing more research and this time to concentrate on finding out more about Cardiac Sarcoidosis, I returned to the internet, and fortunately found the Marshall Protocol. I would have to say that it was my heart that brought me to the MP.
I wanted to you to know some about my history of cardiac “issues” before I spoke more about the PVC’s. I do understand how scary it is when the heart does things that aren’t “normal”. It can be terrifying when PVC’s happen frequently. However, they’ve happened for so long during my life that I have learned to “ride them out”, and that my heart will settle down, usually on it’s own.
From the time that I started weaning off of Prednisone, all of the symptoms, including the PVC’s increased in frequency. I’ve had frequent PVC’s, sometimes every few minutes over a half hour or so, and I’ve counted 10 in a half hour. I didn’t count after a half hour, as it became boring waiting for them.
I’ve had MANY times that it has stopped for an extended period, especially when it has apparently “converted itself” from a rapid pulse rate such as 160, down to 120. Yes, it actually stops - feels like a tight fist, and then restarts at the lower rate. A VERY STRANGE feeling!
I’ve even had multiple PVC’s (four) in a row. That was also a very strange feeling, and a bit worrisome. But it has only happened once, that I know of, since I don’t know what happens when I sleep.
During Phase One of the MP, I had a lot of my cardiac symptoms appear. And towards the end of Phase One, most of them had settled down, except for the PVC’s. Dr. Marshall suggested that I do a modified Phase Two because of them. After about two months on the modified Phase Two, the cardiac symptoms stopped!
I will say that they did return when I started the full Phase Two, but they are less frequent, and less intense than they were prior to my being on the MP. Although they sometimes reappear when I increase the antibiotics, they settle down again as the time goes on.
I do take extra Benicar (40mg every four hours) when I go out in the sun. And, if my heart is “being silly”, I also take extra Benicar. Routinely, I take it every six hours, and will take an extra 20mg (crushed up) as needed for the cardiac symptoms, and then will take another dose of 40mg four hours after my previous dose of 40mg to help further reduce whatever inflammation has occurred.
For anxiety, if the extra Benicar doesn’t help, Alprazolam works for me. My sleep “schedule” is backwards… I seem to be on “Australian Time”. Which means that here in California, I’m usually awake all night. The Alprazolam helps me fall asleep sometimes. I also take Diphenhydramine (Benadryl) which sometimes helps me fall asleep too.
She shouldn’t take anything that is said to “help her immune system”. Her immune system is working just fine, and doesn’t need anything but the MP medications to help her get her well.
Since the tests that Hellohope has had showed that she doesn’t have any major problems with her heart, I hope that she will learn to “accept” the PVC’s simply as proof that the MP is going to help every part of her to get well. Even in places that she didn’t know had “problems”.
My first cardiologist told me that my cardiac symptoms would be a nuisance, but that I shouldn’t worry about them. And, I haven’t. I do use them as “indicators” of how things are going, but I don’t worry about them.
I hope that I've been able to help you both with your concerns.
Lottie
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Dx- Sarc 1999 Cardiac, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25 D 48, 25D 17) (May 05-1,25D 35, 25D < 5) Pred x5yrs-now off! 5/19/04 beg Benicar 10/11 beg Mino, 1/24/05 mod P2, 2/2/06 P2, 1/6/07 P3 - Worked as RN until back injury
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hellohope
inactive member
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Posted: Mon Dec 4th, 2006 09:30 |
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| Hi Lottie,Meg and Vicki Hellohope taking benicar Q3H . No mino at the moment.No other meds. Thankyou Vicki for the info on the bread i will follow that lead.To Meg thankyou for your informative post it has eased our concerns about the arrythmias, I guess its a bit unexspected to have heart involvement when other people with the same illness do not have much heart problem but i guess we are all different in the way we present our illness.Thanks Lottie, gutsy effort on regaining your health I hope everything keeps going well for you , you deserve to get well after so long being ill.My wife is sleeping just not at night time it seems like her body clock is on U.S. time , maybe you should swap countries.Take care Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hrts4me
Guests visiting Phase 1/2/3
| Joined: | Sun Oct 17th, 2004 |
| Location: | Texas USA |
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Posted: Mon Dec 4th, 2006 16:54 |
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Hi Mark and Hellohope,
I do have abnormal ekg's and have had for quite sometime. I am also on verapamil and nitrogylcerine. I have been told by my cardiologist not to worry about the funny beats, as Meg told you they are benign, meaning they aren't a problem and don't cause damage. This is caused according to my cardiologist by conduction problems (think short circuit) and the inflammation is fueling them.
I will tell you too, that what Lottie says is true. I was on the MP and then went off in Ph. 2. My heart symptoms got so much worse, and I came back to the protocol. From the day I started Benicar again----my heart symptoms are so much better. I am back up to Ph 2 Modified MP, and my heart is healing. (During the time I was off the protocol I was being transferred and staying in the hospital, due to angina). Without benicar and antibiotics treatment the heart just becomes more infected.
I have had NO angina since back on the MP, as the benicar is doing its job, and the abx are killing the pathogens that cause heart disease.
I hope that hellohope will learn to recognize that these flutters and funny beats are'nt going to hurt her (that is what is meant by benign)---but that not treating them and killing the infections with abx will cause them to get worse, and possibly progress into full fledged heart disease like I have now, with coronary blockages.
Now is the time for hellohope to get moving on Ph 1 Benicar and abx, and start the work of killing what has shown itself to just have begun to take hold in the cardiac arena. Now there isn't a danger to her---with the flutters and skipped beats. Its her heart trying to show her it's time to move and progress.
As far as Transfer factors, I taked to an immunologist about that and colostrum. I was told they do not work, because the acids in the stomach neutralize them. When newborns receive colostrum from mom's milk--their stomach contents contain none to much less acid than an adults. So the immunologist said they were useless.
I would be leery of using amitryptilene in CFS. It has been shown to cause RLS, which is a form of irritable muscle spasm (Restless Leg Syndrome), and since the heart is a muscle, this may be causing some spasms.
Best hrts
Last edited on Mon Dec 4th, 2006 17:03 by hrts4me
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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hellohope
inactive member
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Posted: Wed Dec 13th, 2006 22:22 |
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Hi all Hellohope taking benicar Q3H.No mino yet.No other meds.Can you please tell me if the antideppresant ( AROPAX) Paroxetine Hydrochloride is O.k. on the M.P. Also my wife is taking benicar Q3H and she is still getting a lot of arrythmias ( atopic and PVCs ) shouldnt the benicar stop this or will the arrythmias persist anyway as she didnt get hardly any arrythmia problems before she started the M.P. we dont understand why they are so prevalant now her other symptoms are not to bad , just the arrythmias.She seems to get heaps more at night.Also can food sensitivities bring on arrythmias.We dont know what to do.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Posted: Thu Dec 14th, 2006 00:26 |
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Paroxitine (Paxil) is okay to take while on the MP. It is particularly good at relieving both depression and anxiety. I'm glad to know that Hope will consider taking this medication. It may take a few weeks for her to experience the full effect. When she is less anxious, she will need to begin minocycline to make some recovery progress.
Yes, it is expected to have extra beats while on the MP (these have been proven benign for Hope) as her cardiac inflammation slowly resolves. This is an immunopathology symptom and reflects subclinical inflammation in her heart that was not evident before. It will get worse if not treated and be evident even if not on the MP.
I am not aware that food sensitivities can provoke extra heart beats. Keep in mind that her heart is inflamed and until the cardiac tissue is normal, Hope can expect these benign extra heart beats.
I glad to know you and she are finding a way to hang in there with the MP. We know it is difficult for Hope. Let us know, as often as you need to, if we can help
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hellohope
inactive member
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Posted: Thu Dec 14th, 2006 03:19 |
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| Thanks Meg This morning when she took her 20mg Q3H dose of benicar at 3.00am she started getting several arrythmias every few minutes by about 4.30am so she crushed 20mg and they slowed down then when she took her 20mg at 6.00am she said they increased within 20 minutes of the benicar dose ,if she had cardiac inflammation we thought the benicar would stop the arrythmias so we can keep the arrythmias tolerable.When we introduce mino is it correct to pressume the arrythmias will be worse if so how are we going to keep them tolerable if the benicar doesnt slow them down.I am afraid hellohope will not be able to cope and she will stop treatment.Thankyou Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Posted: Thu Dec 14th, 2006 03:28 |
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Mark,
Hope must understand that her doctors have evaluated her extra beats and determined that they are not harmful. Therefore, the idea of whether or not they are tolerable is in her mind.
Benicar does protect against inflammation but it also allows the immune system to kill the bacteria. Benicar cannot always completely eliminate a symptom right away.
Yes, Hope may have more extra beats when she starts minocycline. But this is the only way to proceed to a cure. Without the MP, her heart will deteriorate and it may be even more difficult for her to 'tolerate' the extra beats if she tried the MP later.
Reducing her anxiety seems to be the key. Paroxetine has a good chance of doing that. Please keep in touch.
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hellohope
inactive member
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Posted: Thu Dec 14th, 2006 09:14 |
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| Thankyou Meg Hellohope is starting paroxetine tomorrow, she has been on this drug before the M.P. so we know that she is O.K. with it.At the moment she is struggling to get over a bad common cold that she has had for the past 10 days.She is also worried about light exposure, she doesnt need to be in total darkness, I told her a 20w globe in her bedside lamp with her noirs on is fine.Do we need to black out the whole house with plastic up the windows or is outside blinds and inside blinds with curtains drawn enough to keep her vit D down.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Posted: Thu Dec 14th, 2006 14:20 |
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The information in the following FAQs should be helpful to you and Hope in determining how diligent she needs to be regarding sunlight avoidance. It is really a matter of experimentation and recognizing when/if symptoms are exacerbated by exposure to sunlight.
Photosensitivity During Recovery from Th1 Inflammatory
What are the new recommendations regarding sun exposure?
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hellohope
inactive member
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Posted: Thu Dec 14th, 2006 21:37 |
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| Hi Can you tell me if vitamin D1 ( thiamine ) added to bread is contrary to M.P. Thankyou Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Posted: Thu Dec 14th, 2006 22:14 |
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| Thiamine is vitamin B1 and it is fine to eat bread that has this supplement added to it.
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hellohope
inactive member
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Posted: Fri Dec 15th, 2006 04:23 |
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| Thanks Meg Hellohope will be taking a med called ( Temazepam ) to help her sleep until the Paroxetine takes effect in approx 10 days. Is Temazepam o.k. to take on the M.P. as she hasnt slept at night for over a week.Thanks Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Lottie
Board Staff
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Posted: Fri Dec 15th, 2006 08:14 |
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Mark,
Temazepam is fine for Hope to take. I'm glad that she is taking medication to help reduce her anxiety.
I know that they are disconcerting, but I also hope that she will soon find that the arrhythmias are merely, as my first cardiologist said... "just a nuisance".
The really good news is that there will be fewer in her future when the inflammation in her heart is gone, and she is well.
Lottie
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Dx- Sarc 1999 Cardiac, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25 D 48, 25D 17) (May 05-1,25D 35, 25D < 5) Pred x5yrs-now off! 5/19/04 beg Benicar 10/11 beg Mino, 1/24/05 mod P2, 2/2/06 P2, 1/6/07 P3 - Worked as RN until back injury
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hellohope
inactive member
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Posted: Wed Jan 17th, 2007 07:17 |
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16 Jan 07: Start mino 25mg, Benicar 20mg Q3H. avoiding light & D
Hello All,
Well I was asked to do an update once I commenced minocycline again. Took 25mg yesterday at 12noon. Around 3pm felt a bit off, fatigue came on and racing heart. Fatigue rest of night. Not much herx today. Since being more diligent with light and D foods things have definately improved. Benicar also at 20mg every three hours has helped immensely. Surprised not much of a herx, as I was expecting something major....
I have felt so well the past four weeks just on benicar. My right arm has improved in strength after last year it started to deteriorate and I couldn't grip with it. I have started writing again, and can type now for one hour straight no problem...my brain function has improved so much I can't believe it. My heart also has improved, although unsure why. Hopefully the inflammation is on it's way down and bugs are going to be history....
Many thanks to all the modertors and health professionals for your help so far and I now have confidence that I will get through this.
Hope 
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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